Posts Tagged ‘MS’

Marriage, by contrast, is an institution of close, complementary cooperation. Its success or failure depends upon the the couples, ability to work together as a TEAM. However, in order to accomplish this, we first have to understand that in marriage we carry our own emotional baggage along with us — some good and some, not so good. The not-so-good seems to stand out a lot more.

In fact, our unconscious minds guide us to relationships that replicate childhood experiences, but most couples are unaware of this. Couples often tell me that the closer they get, the more they argue. Keep in mind, this is not a bad thing; this is emotional healing trying to take place. Hashem is giving you a second chance to heal unresolved issues and childhood pain. With a little “detective” work, perhaps if we can find the place where the person’s childhood pain came from, then perhaps we can heal it.

Let me explain how this process begins. Your childhood experiences of “home” — regardless of whether those experiences were positive or negative — will not surface until you get into a relationship. This is because, as a child, you have a mental association that love = home. Unconsciously, your mind will equate what associations you have with home, with what love is “supposed to feel like.”

For example if Home = fear and danger, Love = fear and danger; Home = tension and criticism, Love = tension and criticism; Home = abandonment and anger, Love = abandonment and anger.

If you remember your high school math, if A = B and B = C then A=C.

It is the same thing in relationships, as the two of you start to get closer with each other. You will begin to love each other, and therefore you may start to fight with each other. Childhood pain and old baggage from home will begin to surface, seeking a partner to heal them, with new love.

Many couples break up at this stage and tell everyone they were not compatible. They are just not aware of what is happening to them. They think if they fight harder, the pain will go away. They are not aware of just how close they were to finding emotional healing and safety. Love also provides the emotional safety so that the walls you put up to protect yourself from being hurt start to come down, and pain you placed in your baggage will start to open up. This is because your heart wants to love someone and have someone to share this pain with, and thus complete childhood unfinished business.

In order to understand this fully I will use a metaphor of a fictitious, young newlywed couple — Yossi and Brindy. They are on their honeymoon, ready to check into a state-of-the-art, Love Fitness Resort. The first-floor honeymoon suite offers new love and a Jacuzzi in every room. Each floor has something special to offer. However, on the second and third floors they will find a love that will make them feel safer than they have ever felt before. The manager of the resort greets them as they enter: “Mazel Tov! Welcome Home.” They both look at each other, and wonder, “Is he nuts? Welcome home? We just rented an apartment in Flatbush!”

When all is said and done, the manager escorts the young couple to their room. “I hope you have a pleasant stay and, oh, by the way, don’t go up to the second or third floor, and take care!”

Once again they look at each other, “What’s on the second and third floor? I’m going up to the second floor”, Brindy says. Our instructions were not to go,” Yossi argues. “Then he shouldn’t have told us not to go. Besides, now that were married we can do stuff like this.” As the couple ascends to the second floor, something begins to happen. Brindy says, “Check out the wall paper, it’s so warm and inviting.” Yossi then says, “You’re right! There is something about this love floor that makes me feel safe and secure.” Once again, love provides the emotional safety, so that the wall you put up to protect your heart from pain can now feel safe to come out. What Yossi and Brindy may not be aware of, is that new love will bring to the surface old pain. At this stage Yossi and Brindy may become critical of each other and even get angry. The flashbacks of their pasts are necessary if emotional healing is to take place. Brindy then says, “This is so cool, let’s go up to the third floor.”

My generation, for the most part, had a very strong work ethic. It came, perhaps, because many of us grew up as children of immigrants and we inherited it from our parents. Working hard, being a loyal employee was the way to get ahead, get out of poverty and create a better life for our families. Many of us went into the “helping professions”, teachers, social workers and often loyalty to our jobs was first in our lives. And so when chronic illness struck some of us, the work ethic persisted for many who were able to continue working. Going on disability was something to avoid and many chronically ill of my age group hung onto their jobs as long as they could, working harder then thought possible to continue doing a good job. The reward they got for doing this was mixed.

Moshe had been a professor at the university for 31 years. For 26 of them he had fought his MS, pushing himself hard to continue to give to his students and his colleagues. As the diseased progressed, he just worked harder to meet the needs of those around him at his job. Instead of going on disability when he needed a cane and then crutches to help him walk and finally a wheelchair when he could no longer walk or even stand, Moshe just got up earlier and earlier to meet his personal needs, get into work on time and continue his routine. His days became longer as it took him more time to do all he had before for his students and his peers. No matter what it took out of him or what sacrifices he had to make, Moshe never allowed himself to compromise on the quality of his work.

Finally, after 31 years of teaching, he was hospitalized. He went on sick leave. He heard from no one. Not one of the people he had worked so hard with bothered to call or even send a card. The office sent no flowers. It was as if he never existed. After the sick leave expired, Moshe went on short-term disability, still hoping to return to his job. After a year, he began to accept that he would never return to his life as a professor. Sadly, he asked his children to go in to his office and pack up his books and personal belongings. When he called his department to arrange it, he was told that they had needed the office space a long time ago. All his things had been packed up and put in storage without a word to him or his family. He never had a chance to have someone take his personal things from his desk or sort through what was important and valuable. It was as if he never existed at the university.

Richard was a social worker. He too struggled valiantly to try and stay in the work force. But, Richards’s disease progressed too quickly and affected him mentally as well as physically. He was forced to stop working. Still, Richard’s colleagues kept in touch and made sure to include him in a staff lunch every so often. Today, Richard no longer speaks, it is doubtful that he even recognizes his former peers, yet Richard is still included in a social lunch at least once a year. His colleagues insist that he join them. They feel it is the least they can do for Richard as a person and a peer who gave so much to them and the workplace.

They say that when someone leaves a job the impression that is left is the same as if you took your hand out of a pail of water. Nothing. As if you’ve never been there at all. After all, everyone is replaceable. But how your leaving is treated by your peers and employers can make all the difference in how you face the next step in this adventure we call life. If Moshe had received a call explaining that the university needed his office space while he was sick, if they had asked him if he’d like to have someone come in and take his personal things, perhaps go through his desk before they packed up, he would have understood and felt that he was still valuable. That would have helped him cope, to whatever small degree, with this next phase of his life like it did for Richard. Instead, they treated him as if he had never existed or contributed to his work place and that is how he felt. His ability to deal with his disability was made more difficult by this blow to his self-image. A five-minute phone call would have made all the difference.

Birthdays, anniversaries, life cycle events are all times we look forward to. Though we may not appreciate the age we are reaching, we do look forward to celebrating the fact that we were born. More so, we enjoy that others are happy that we are in their lives and come to celebrate with us. But when your spouse is chronically ill, whether at home or in care, celebrations often become lonely, sad experiences instead of happy ones with loved ones.

I was privileged to participate in a women’s well spouse support group. The women varied in ages but all their husbands had MS and so, all were young when the chronic illness came to live in their home. They started each monthly meeting with a bouquet of birthday flowers given to the women who had a birthday that month. They shared with me that the members of the group missed the acknowledgement of this special day, as none of their husband’s were able to make it special any more. So they decided to pass the “kitty” around each month and have everyone put in whatever amount of money they were comfortable with and with that, they bought flowers for anyone who had a birthday. One member of the group told me she could buy flowers for herself, but receiving them from the group was better. It was not the flowers as much as the fact that someone acknowledged the day and tried to make it special.

Laila was a middle aged member of the group whose husband had been in a nursing home for almost 10 years. He could no longer speak and no one knew just how much he understood even if he recognized his wife. The nursing home, always left a card for her, signed with her husband’s name, on their anniversary. Laila appreciated the sensitivity and care of the nursing home workers to do this, but at the same time, she told me, it somehow made the loss worse. She would not want them to stop sending the card, but the sense of loss it brought on was so painful. She feared that the sense of loss without the card might even be more painful.

Rochel shared a different experience with me. She had recently married off her daughter. Her husband, because of a sudden worsening of his condition, was not able to attend the wedding at the last minute. Rochel said the most difficult part for her was walking her daughter down the isle alone. “It just didn’t feel right.” She said. “My husband should have been there, on the other side of our daughter, taking her with me to this next part of her life. It’s something we always dreamed about. Walking her down alone brought me more pain than I thought was possible. It was even worse standing under the chupah without him. If I had been a widow, perhaps I would have been prepared for it, though I’m sure it still would have been enormously painful. But being there alone, when just last week we were anticipating the pleasure of doing this together – well…it’s just too hard to talk about.

Shoshana’s children are married and no one lives near her. Her husband is also in care. He does remember special days and always tells his wife to buy herself flowers from him and to get herself a present. But somehow, she relates, it’s just not the same as when someone picks something just for you. My kids call to wish me a happy birthday or happy anniversary. Then I go to the nursing home and hear about how bad he feels. I know it’s tough for him, but I wish I could have just one day, just one day out of 365, that I could spend free of talk of illness. That would be the best birthday present I could have.

D’vora is still adjusting to being a well spouse. She is just getting used to being alone on special occasions and having no one to celebrate with. It is only six years since her husband was diagnosed. But D’vora still thinks back to her birthday five years ago when a friend dropped in unexpectedly with a birthday cake and flowers. She told me she couldn’t believe the difference it made in her day, even her week. It gave her a feeling of being cared about and thought of. She still thinks back to it even though it was five years ago. Nothing like it has happened since.

Special occasions are important. For well spouses, or anyone that has no one to acknowledge and make the day just a bit special, life becomes sadder and more difficult. If you know someone who is alone on a special occasion, taking the few minutes to send an e-card, or a paper one or perhaps drop off a flower or even a candy bar can make all the difference. It is not what you do. It is in the doing something, anything that makes the person feel cared about and loved. Isn’t that something we all need?

This e-mail came across my desk. It was written by that famous writer known as “unknown author.”

“A lecturer, when explaining stress management to an audience, raised a glass of water and asked, ‘How heavy is this glass of water?’ Answers called out ranged from 20g to 500g. The lecturer replied, ‘the absolute weight doesn’t matter. It depends on how long you try to hold it.’

‘If I hold it for a minute, that’s not a problem. If I hold it for and hour, I’ll have an ache in my right arm. If I hold it for a day, I’ll need an ambulance. In each case, it’s the same weight, but the longer I hold it, the heavier it becomes … And that’s the way it is with stress management. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.’

To me, the glass of water symbolizes chronic illness. It is impossible to put down. Even when you are away from home on respite, or trying to do something for yourself, you are still holding that glass of water in your mind as it gets heavier and heavier. That is why, when living with chronic illness, you have to begin to pour off some water from the glass whenever possible.

Lil’s husband had MS for over 10 years when they bought an accessible van. Now that he was wheelchair bound, it was becoming harder and harder for her to help him into the car and then haul the wheelchair into the trunk, and do the reverse when they arrived at their destination. The van did not come without its own set of difficulties. Though Richard, Lil’s husband, was able to just roll up the ramp onto the van (as long as Lil pushed the chair), Lil had to raise and lower the heavy ramp, push and guide the wheelchair, and then tie down the wheelchair to the van floor.

Still, to Lil this was a great improvement over transferring her husband from the wheelchair to the car and putting the chair in and out of the trunk. That is why she bought the van. It was her way of making her life just a bit easier. It was her way of spilling a few drops of water out of the glass she was holding.

Over time, Richard deteriorated and needed more care than Lil could provide at home. He was placed in a nursing home and Lil held on to the van in order to take him on outings. As Richard’s condition worsened and the outings became limited to family dinners and in town meetings, Lil reevaluated the need for the van. She discovered that what she would save on insurance and cost by selling the large accessible van and buying a comfortable small car for her to drive would just about pay for a handivan to deliver Richard to and from their outings. What she would save in terms of her own stress and exertion was immeasurable. Lil sold her van.

Today, Lil hires the handivan whenever Richard needs to go anywhere, whether to meet her at a restaurant or a museum or home for dinner with the family. The handivan drivers pick Richard up, secure the wheelchair in the van, and deliver him into the designated place. Lil only has to be there, waiting inside if the weather is cold, to meet him. This leaves her more able to enjoy the outing being less physically and emotionally exhausted.

The ‘glass of water’ you are holding may be chronic illness or any other stress that is impossible to put down, even when you can manage a holiday or a few hours to yourself. If the stress is with you constantly, attached to your emotions and your mind without end, then what you must do is explore ways to lighten the load. Is there a piece of the stress that you can let go of, hire out, or let someone else handle? Look at the whole picture. Are there things you can have others do so that they are no longer your sole responsibility? There are many burdens that paid helpers or volunteers can free you of.

It may be little things, but each drop of water you spill from the glass you are holding makes the glass just a bit easier to hold.

You might be surprised at how much better you feel even after giving up just one or two minor, routine tasks, and how much better you can cope with the many that remain. Though the glass of water will never be light, you can make it weigh a bit less, and in doing so, make your life more livable and manageable.

None of us would deliberately hurt our friends. We would not tell jokes about the blind to a blind person or to a relative of a blind person. We would never use derogatory terms like “retard” around anyone who had such an affliction. If we are more sensitive or have experienced feeling the hurt such things bring, we would never use these terms at all.

This sensitivity seems to be lacking when dealing with chronic illness. As I interview well spouses and hear their stories, I am always amazed at how many of them have had the same experience. Theirs are stories of abundant hurt, though always well intentioned. I hope that in sharing some with you, we may all become more sensitive as to what and how we speak.

Rina and Marvin got a phone call from an old friend, Judy. Marvin had been chronically ill for a while. Judy, who lived in another state, called to catch up and see how they were. Over the last year, Marvin had severely deteriorated physically. He had lost total sensation in his lower body and on bad days, his hands showed signs of weakness as well. Throughout his illness, his mind remained intact. Judy had a distant relative who had recently been in a car accident, and though she had walked away from the accident, brain damage had occurred. While Judy was talking about the accident, she began to philosophize on illness. Perhaps she forgot whom she was talking to. The conversation went something like this.

“I can’t imagine how hard it must be, can you?” she said, “I think it has to be the worst thing to have your mind go. It’s so much worse than to have your body deteriorate when your mind is working.”

“I disagree,” Rina said, hoping to awaken just a bit of sensitivity, and remind Judy without being obvious that her husband was on the extension.

“Oh yes! For me it would be far worse,” she continued, “than to have an active mind and a body that doesn’t respond to your command. Well maybe if nothing moved, not even a pinky. Then it might be worse. I just can’t imagine it, can you?”

Neither Rina nor Marvin could respond, as Judy, with her healthy mind and body, pontificated on the pros and cons of different disabilities. Rina wondered how her husband felt, sitting in his wheelchair, being a participant in this conversation. He was unusually silent as Judy rambled on. When the conversation was finally over, both Rina and Marvin felt very depressed.

Michael’s wife had suffered from MS for over two decades. Michael had been by his wife’s side throughout her steady decline in health and the ups and downs of disease. They had the closeness that people share when they go through terrible tragedy together and survive. They felt each other’s pain, sense of loss of the present, and fear of the future. There was nothing about this disease that Michael was unfamiliar with.

One day Michael, received an e-mail from an old friend. She had just read a book about living with MS. She said it explained a lot to her and thought Michael should read it as it might help him to understand what his wife was experiencing.

Jenny’s husband had been chronically ill for many years, suffering a slow but steady downhill loss of function. He was no longer able to walk or dress himself. Jenny ran into Lisa at the shopping center. Lisa was ordering flowers and preparing dinner for a friend. The friend’s mother had fallen and broken a hip. Lisa’s friend had temporarily taken her mom in after she was discharged from the convalescent home, in order to help her. Lisa was hoping the dinner and flowers would help ease the burden.

“I just can’t imagine how hard it must be for her to have to live with someone who can’t do basic things for themselves,” said Lisa of her friend. “Even for a little while. It must be so hard to cope with. It’s beyond my imagination. Yours too, I guess.”

Three different people in three different cities under three different circumstances telling me basically the same story. A story I have heard so many times before. Is it any wonder that many well spouses have come to believe that they and their situation are invisible? Is it any wonder they have stopped trying to explain what they live with?

Is it any wonder that they have come to believe that no one cares? Do you want to change how they feel? Please remember to place your brain in gear before operating your mouth.

[Information stated in this article should be verified with your Orthodox rabbi.]

A Get (Jewish divorce) must be given freely and received freely. A man must be able, in front of two witnesses, to indicate his willingness to divorce his wife. He must be of sound mind, know what he is doing, and be able to indicate his desire to divorce, or the divorce is invalid. Living together after the wife receives a Get nullifies the Get. A wife may not remarry without a Get for as long as her husband is alive. Once a person has lost his cognitive ability, and may, for example, no longer recognize his wife or know what is going on around him, he can no longer give his wife a Get. She then cannot remarry for the rest of his life.

In the same manner, if the husband is on life support, and is physically unable to indicate his desire for a Get, the wife cannot receive a Get and she cannot remarry for as long as he lives.

There are many chronic illnesses today that affect the young. The disease may be diagnosed shortly after a couple has been married or celebrated the birth of a child. The couple may struggle with a slow, ever deteriorating condition for as many as 30 or more years. In those years of caring for him, the wife loses, over time, her companion, lover, friend and breadwinner.

The deterioration may be so quick, on the other hand, that the sick person loses all physical and cognitive functioning within months. This may leave the young wife childless, or with young children whose father doesn’t know them and is unable to relate to them.

At some point, the well spouse may find herself with a husband who has neither the mental capacity nor possibly the physical capacity to give her a Get. She is bound to him and cannot remarry for the rest of his life. She may have nursed him for over 20 years and still be young, perhaps in her 40’s, with a desire to proceed with her life, or she may be still in her 20s, with a husband in a nursing home. Without a Get, she cannot remarry. She is, for all intents and purposes, an Aguna for the rest of his life.

Most couples dealing with the onset of chronic illness rarely think about divorce initially. They are so overwhelmed with just coping with the losses that multiply every day as the disease progresses. They live with coping in the moment, caring for his needs and thinking little of the future. If the disease moves rapidly, the inability to give a Get may be on them before they realize it.

For other couples who have coped for decades, the idea of a Get may not occur to them until much later. At that point, the wife is still young, the husband is continuing to deteriorate and may need care beyond what she can manage at home.

The wife’s thoughts may legitimately turn to her future. She has cared for her husband for decades. She is still young, still healthy, and perhaps at some point would like to remarry. If her husband understands and gives her a Get, he can no longer live in their home and receive her care. If he does not understand, or his condition is such that a nursing home is called for, and the placement is made against his will, he may refuse to give his wife a Get. She, at that point, has no choice but to wait and watch him deteriorate. Her only freedom is at his death.

Leila learned that her husband had MS the day she found out she was pregnant with her second child. She was in turmoil of emotions, but was determined to keep her family together as best she could. The thought of a Get never entered her mind. For a few years, she managed to keep her husband at home and care for him. However, his mental and physical deterioration was swift. She finally had to place him in a nursing facility. She still visits him several times a week and takes him out for a walk or a car ride. He no longer speaks or knows who she is. At this point, she thinks of remarrying someday, but she can no longer get a Get. She is in her 30s.

Rivka had to put her husband in a nursing home against his will. He could not see the burden which his inabilities had placed upon his wife. He was deaf to the verbal and emotional abusive demands he constantly yelled at his family. He is still very angry. Though unable to do anything for himself physically, his mind is intact. Rivka has tried discussing a Get with him, but he refuses to give her one. Rivka is in her 40s.

Shulamit’s husband may need a nursing home in the future. Presently, he is living at home and his wife is doing her best to cope with the stress and difficulties. They have talked about a Get. Shulamit’s husband does not want her bound as an Aguna if he deteriorates to the point where he will no longer be able to give a Get. He has told her she needs to go on with her life.

If she received a Get now, Shulamit would not be able to continue to care for her husband in their home without nullifying the Get. They have heard there are certain circumstances of physical disability wherein this does not apply. If their situation qualified, they could continue to live together for the purpose of care and still have a Get. They have also heard that sometimes a provisional Get can be granted. This would go into effect (unless voided by the husband beforehand) at a time when the husband could no longer cognitively or physically consent to a Get. They are still working on clarifying this information.

Well spouses’ lives are difficult. Most will do the best they can for as long as they can to care for their husbands. Many are quite young when their husbands no longer recognize them or are physically incapable of communicating. At that point, some well spouses would like to go on with their lives and experience the fulfillment and caring that most of us have in marriage. It is terrible to ask a well spouse to choose between caring for her husband now and having a future later. As we live longer and are faced with more diseases that rob us of our physical and mental ability over time, there must be a Halachic way to deal with these Agunot-in-waiting. ◙

Last week I wrote about well spouses who eventually chose to get a physicians help with the problems they were having coping, with their partners’ chronic illness. While interviewing well spouses on this topic, I discovered that several people had chosen to avoid discussing their problems with a professional and instead sought help in over-the-counter holistic medication and herbs. Many did this without the help, guidance or monitoring of a nutritionist, homeopath, doctor, pharmacist or naturopath.

It is important to remember that all medications, whether herbal or prescribed, need to be handled with care and monitored by a professional. All our prescribed medications have been tested and dosages standardized. This is not necessarily true for all over-the-counter natural medications. The same product produced by different companies may have different strengths and purity. They may contain ingredients that are contra-indicated with other medications that you are taking. Though there is certainly a place for these medications, and many may help where prescribed medication have not, it is important to remember that they are medications. Like all medications, they need to be monitored by someone who is familiar with them and knowledgeable about where and how they are produced.

Zev was a well spouse under tremendous stress. He was also overweight and had a family history of heart disease. Zev was experiencing chest pain periodically. His doctor sent him to cardiologists, who after doing several tests, suggested that Zev have an angiogram. To Zev’s delight, the angiogram only showed negligible blockages of ten percent in his arteries. Zev’s cholesterol had always been within a normal range. Still, his cardiologist felt it needed to be lower and put him on cholesterol medication.

The possible side effects of the medication were disturbing to Zev. He went on the Internet and researched several natural alternatives to the medication his doctor prescribed. Instead of just switching the prescribed medication for the natural one, Zev brought the information to his cardiologist. Together they worked out a safe plan to see if the alternative medication would work for him. Over time, and with the help of his cardiologist, Zev was able to switch to the natural medication that he was more comfortable with.

Shoshana was a well spouse. She was also in the sandwich generation. Shoshana had young children, a husband with MS, and a mother with many problems, which included a heart condition and depression. As Shoshana’s mother’s health worsened as she aged, so did her depression. Shoshana had heard about a herb that was thought to be helpful with depression. She brought some to her mother. Following the suggested dosage on the bottle, her mother began to take the medication.

It never occurred to Shoshana or her mother to discuss this new herb with her doctor or cardiologist. Whenever the herb was on sale, Shoshana picked it up regardless of brand. It never occurred to her that the dosages and purity could be different in different brands. It never occurred to her that it could contain ingredients that could pose a problem with her mother’s other medications.

Pela was a well spouse who had high blood pressure. Her blood pressure had been under control for a long time. Quite suddenly, it rose again. Her doctor tried many new medications, but had great difficulty getting her blood pressure consistently under control again. It would be normal for a while and then spike again. Only later was it discovered that Pela was a licorice addict and that the licorice she consumed was nullifying the effectiveness of the blood pressure medication.

Aaron’s chronic illness was causing a tightening in his muscles during the day. As a result, he began to have pain in those muscles at night. His doctor put him on a muscle relaxant on alternate nights. On the nights that he took the relaxant, he slept well. On the other nights, he barely slept. It was not that the pain was unbearable on the nights without the pill. It turned out that the pill was habit forming and Aaron could no longer get sleep without it.

Stanley and Sharon were on the same medication to help them sleep. Stanley had no problem, while Sharon felt she was becoming addicted. Stanley could take the medication as needed. Sharon could not sleep without the medication once she began taking it. Sharon had to come off the medication. She had to come off the medication very slowly. Stanley is still using it.

Doctors today are more open than they used to be to discussing alternative medicine. It is possible today to find a doctor who will consider alternative ways of dealing with a problem. In the same vein, professionals in alternative medicine realize that people are often taking medication prescribed by their doctor when they approach them about a specific problem. The key is to get a professional you trust to help guide you.

Medication is very individual. What works like a charm for one can be a disaster for another. Going on or off some medications require small changes in dosages. Consistency and monitoring by a professional is vital. Do not become your own physician, buy something over the counter, pop the pill and expect miracles. Not only may your miracle not materialize, but you might find a nightmare in its place.